I am 67 and am on Medicare with Aetna as secondary insurance. I had been on Provigil for at least 10 years up until I turned 65 when I could not afford the cost ($575 monthly due to Medicare) to continue the medication. My doctor has given me the 30-day-trial form to fill out for Nuvigil; however, neither Medicare nor Aetna (secondary Part D) would even accept the trial request --because I am 67. Provigil was the first medication that really worked. I was dignosed with Narcolepsy when I was 15 so I have lived with this disorder for 52 years. Giving up Provigil due to the high cost of this medication was a very sad decision, as all the symptoms have come back. Is there any recourse for my situation?
What options are recommended when insurance & Medicare refuse to pay for Nuvigil and/or Provigil?
- 26 Aug 2010 by 123waters
- 4 days ago
- nuvigil, provigil, narcolepsy, attention-deficit hyperactivity disorder (adhd), drowsiness, obstructive sleep apnea/hypopnea syndrome, chronic fatigue syndrome (cfs)
I'm so sorry to hear all of this!! That's just awful! Nuvigil and Provigil are kinda one of a kind drug, and there is no real comparison. The only other stimulant options that would be appropriate would be the other more severe stimulants such as Adderall and Ritalin. You could also try, if insurance covers it, Xyrem (I've heard that it can cost up to $800, but I may be wrong on this) - a hypnotic drug that is or is very similar to a benzodiazepine. Apparently, when taken at night, it regulates your sleep and somehow eliminates the Narcolepsy. For me, I get regular sleep attacks durring the daytime, get sleepy and week when stressed, and am on 250mg of Nuvigil. It keeps me awake durring the daytime, however, I still can't stay awake past 8:00pm. I have anxiety issues among others, and am unable to simply stop taking my medications. In order for you to be tested for Narcolepsy, you have to take a daytime sleep study, drug free. So...
I may or may not have Narcolepsy, and will probably never know. I've also been looking for something similar to Nuvigil, but slightly stronger, however, according to my psychiatrist, there's nothing out there that's even similar. I hope that this is of some help, and I really wish you the best of luck!
The company that makes Provigil and Nuvigil is called Cephalon. That company has a patient assistance program called the Cephalon Cares Foundation. You can contact them at www.cephalon-us.com or at Cephalon Cares Foundation P.O. Box 66585 St. Louis, MO 63166-6585. Oh yeah, here is a phone number as well: 1 (800) 707-8990. Hope this helps.
I too am on Medicare and was on Provigil for a decade before retiring in 2006. Around 2010, my sleep center docs switched me to Nuvigil, telling me the same things, that this was a new version for patent reasons, but also somewhat improved on the absorption front.
At that point my part D subscription carriers started giving me a rough time. I've had to go through an appeal process with each annual renewal, but I own a farm and drive farm trucks and tractors, so this last year I told them I was authorizing my lawyers to sue them if their recalcitrance caused or contributed to an unnecessary accident.
My real problem now is the declining response of my body to the modafinil. My docs tell me I'm on the max dose, two 150's a day, and that studies show any more is not absorbed anyway. So I take about 6000 mg of guarana (a slow, longer acting (?) caffiene containing herbal) a day. But I still have trouble staying awake to do the accounting, my reading, watching sports or movies. I did not know I had the narcolepsy until I was in my fifties, so I have napped and worked my way through much of my life, but my declining capacity to work on mentally demanding tasks is distressing.
I too am wondering what else I can use. I see they have discoved a link between narcolepsy and auto-immune activity, with some success in reversing the effects. Has anyone readng this had any experience or success with this (trib or anti-trib) attempt to reverse the body's attack on its own wakefulness system?
I had the same problem with my insurance not covering Provigil which worked for years (and MUCH better than Nuvigil for me). What I wound up doing with the help of my pharmacist was to figure out the maximum amount they WOULD cover per month. I was taking 2 200 mg per day or 60 pills per month. Osco figured out that my insurance would cover 47 pills per month. So 13 days I have to take just 1 OR 7 days I go without altogether. I vary it, depending on what my schedule demands. I have done this for 2 years now, and although I don't like it - it works better than any other option!
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